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LET'S TALK CLL- Patients & Doctors Discuss the Latest Live! SATURDAY, OCTOBER 14, 2023 Virtual program starts at 10am CDT 11am EDT
LIVE & IN-PERSON EVENT- LET'S TALK CLL Patients & Doctors Discuss the Latest Live! DATE: SATURDAY, OCTOBER 14, 2023 LOCATION: MD ANDERSON CANCER CENTER Virtual program begins at 10am (CT). Register here: https://us06web.zoom.us/webinar/register/5216926341361/WN_8BHNtMXZR9Gjf211Nh_lhA - We're
LIVE & IN-PERSON EVENT- LET'S TALK CLL Patients & Doctors Discuss the Latest Live! DATE: SATURDAY, OCTOBER 14, 2023 LOCATION: MD ANDERSON CANCER CENTER Virtual program begins at 10am (CT). Register here: https://us06web.zoom.us/webinar/register/5216926341361/WN_8BHNtMXZR9Gjf211Nh_lhA - We're
lankisterguy
Volunteer
in
CLL Support
7 months ago
Shingrix availability on PBS in Australia from 1 November has been confirmed
[u][i]SEE THIS REPLY [/i][/u][u]for the latest update to this post[/u]: https://healthunlocked.com/cllsupport/posts/150056558/shingrix-availability-on-pbs-in-australia-from-1-november-has-been-confirmed?responses=150067213 Earlier this year, I posted about a possible change to the PBS to make Shingrix
[u][i]SEE THIS REPLY [/i][/u][u]for the latest update to this post[/u]: https://healthunlocked.com/cllsupport/posts/150056558/shingrix-availability-on-pbs-in-australia-from-1-november-has-been-confirmed?responses=150067213 Earlier this year, I posted about a possible change to the PBS to make Shingrix
CLLerinOz
Volunteer
in
CLL Support
7 months ago
Richters Transformation
I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that. Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance
I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that. Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance
seoul1949
in
CLL Support
7 months ago
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Besremi, Pegasys and Jakafi adverse event question?
As said before, my brother started Besremi recently. And since then I am doing some researches about the safety of drugs for PV and other MPN. To ease my anxious, I guess, my brother sent me a slide seems from Pharmaessential (the mfg of Besremi), as above. The title of the slide is "Besremi is far
As said before, my brother started Besremi recently. And since then I am doing some researches about the safety of drugs for PV and other MPN. To ease my anxious, I guess, my brother sent me a slide seems from Pharmaessential (the mfg of Besremi), as above. The title of the slide is "Besremi is far
Joey1025
in
MPN Voice
10 months ago
Anyone able to put on weight with bile salt malabsorption?
living with bile salt malabsorption from radiation to treat
leukaemia
. I reckon my weight has been a steady 20% less than it should be. And I have a very low BMI. Cholestyramine has made a HUGE difference to my condition. But has anyone found a way to increase weight?
living with bile salt malabsorption from radiation to treat
leukaemia
. I reckon my weight has been a steady 20% less than it should be. And I have a very low BMI. Cholestyramine has made a HUGE difference to my condition. But has anyone found a way to increase weight?
adamcjames
in
Pelvic Radiation Disease Association
1 year ago
flow cytometry is showing about 74% CLL involvement.
Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53 negative. Mutated. He has splenomegaly, and enlarged nodes. Fish is in process. INTERPRETATION A phenotypically abnormal population with forward and right-angle scatter features of small lymphocytes constitutes
Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53 negative. Mutated. He has splenomegaly, and enlarged nodes. Fish is in process. INTERPRETATION A phenotypically abnormal population with forward and right-angle scatter features of small lymphocytes constitutes
juniper1975
in
CLL Support
8 months ago
CLL and mRNA Vaccines
Just saw this abstract, which is one of the papers being presented at the Boston CLL conference: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004157 I don't understand most of it, but this is one of the "Findings": [i]CLL patients and other immunocompromised populations
Just saw this abstract, which is one of the papers being presented at the Boston CLL conference: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004157 I don't understand most of it, but this is one of the "Findings": [i]CLL patients and other immunocompromised populations
BWHR
in
CLL Support
8 months ago
Periorbital necrotizing sweet syndrome
Periorbital necrotizing sweet syndrome: A report of two cases mimicking necrotizing soft tissue infections, Mar 2024. https://pubmed.ncbi.nlm.nih.gov/38487334/ 2 patients with necrotizing Sweet's syndrome - a 74-year-old female with myelodysplastic syndrome, and a 40-year-old female with acute myeloid
leukaemia
Periorbital necrotizing sweet syndrome: A report of two cases mimicking necrotizing soft tissue infections, Mar 2024. https://pubmed.ncbi.nlm.nih.gov/38487334/ 2 patients with necrotizing Sweet's syndrome - a 74-year-old female with myelodysplastic syndrome, and a 40-year-old female with acute myeloid
leukaemia
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
2 months ago
Doctors opinion ….
Obviously I am very concerned about transforming to
Leukaemia
, and would like to prevent that if possible, even though he said it would probably be a couple of years at least. I am 70 and not ready to go yet! I will see what Professor Harrison’s opinion is.
Obviously I am very concerned about transforming to
Leukaemia
, and would like to prevent that if possible, even though he said it would probably be a couple of years at least. I am 70 and not ready to go yet! I will see what Professor Harrison’s opinion is.
lizzziep
in
MPN Voice
9 months ago
Some results, at last
I had some blood sent for Next Generation Sequencing back in March, I’ve been waiting for the results. Consultant phoned this afternoon, he says I am now post ET MF or words to that effect! My platelets are currently 559, I’m on one capsule of Anagrelide twice a day. I was extremely anaemic and after
I had some blood sent for Next Generation Sequencing back in March, I’ve been waiting for the results. Consultant phoned this afternoon, he says I am now post ET MF or words to that effect! My platelets are currently 559, I’m on one capsule of Anagrelide twice a day. I was extremely anaemic and after
lizzziep
in
MPN Voice
11 months ago
Benzene
Have MPN ppl here been exposed to benzene?I recently read it can be detrimental to the bone marrow. As a child if I got paint on my hands we would clean it off with pure benzene. I'm wondering if that is why I have PV and my sister has lymphoma. My MPN doc says no - the amount would not have been enough
Have MPN ppl here been exposed to benzene?I recently read it can be detrimental to the bone marrow. As a child if I got paint on my hands we would clean it off with pure benzene. I'm wondering if that is why I have PV and my sister has lymphoma. My MPN doc says no - the amount would not have been enough
ERei
in
MPN Voice
11 months ago
Update.
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Jacksc06
in
CLL Support
8 months ago
Annoyed and Need to Vent
I had a blood that showed elevated counts in RBC’s, hemoglobin, and hematocrit. I got referred to a hematologist who did the JAK2 test and tested my EPO. JAK2 test is not detected & EPO is normal. He suggested that I do not have a MPN, phew what a relief right? Nope. Told me I should give blood every
I had a blood that showed elevated counts in RBC’s, hemoglobin, and hematocrit. I got referred to a hematologist who did the JAK2 test and tested my EPO. JAK2 test is not detected & EPO is normal. He suggested that I do not have a MPN, phew what a relief right? Nope. Told me I should give blood every
Lappool
in
MPN Voice
11 months ago
Lymphatic drainage massages
After reading CLL is dormant in the blood stream but active in the lymph nodes I wondered if it might be be beneficial to keep the cells circulating out of the lymph nodes as much as possible. It seems intuitive exercise and hydration would be good for this potentially but should have no real negative
After reading CLL is dormant in the blood stream but active in the lymph nodes I wondered if it might be be beneficial to keep the cells circulating out of the lymph nodes as much as possible. It seems intuitive exercise and hydration would be good for this potentially but should have no real negative
Rando21
in
CLL Support
8 months ago
A ‘wobble’ caused by subset 6 CLL.
Hi all, a very ocasional póster here but avid reader of the many highly informed contributors that make this site what it is. I was diagnosed with stage ‘A’ CLL in 2021 and continue to be on W & W. I have many of the classic symptoms but not severe enough to warrant treatment - yet! I’ve recently been
Hi all, a very ocasional póster here but avid reader of the many highly informed contributors that make this site what it is. I was diagnosed with stage ‘A’ CLL in 2021 and continue to be on W & W. I have many of the classic symptoms but not severe enough to warrant treatment - yet! I’ve recently been
Petroc
in
CLL Support
8 months ago
Chemotherapy for pv
Apparently I have 7%
leukaemia
cells within my bone marrow. The course of treatment they are suggesting is a month in hospital on aggressive chemotherapy.
Apparently I have 7%
leukaemia
cells within my bone marrow. The course of treatment they are suggesting is a month in hospital on aggressive chemotherapy.
Georgehb
in
MPN Voice
1 year ago
Uveitus
I told him I have CLL and in the middle of having treatment but he didn’t seem to have herd of it which I wasn’t surprised but after looking it up it can be because of lymphoma or
Leukaemia
.
I told him I have CLL and in the middle of having treatment but he didn’t seem to have herd of it which I wasn’t surprised but after looking it up it can be because of lymphoma or
Leukaemia
.
mush56
in
CLL Support
7 months ago
Story from The Guardian about gas stoves and links to lymphomas and leukaemias.
https://www.theguardian.com/environment/2023/jun/20/gas-stoves-benzene-levels-study
https://www.theguardian.com/environment/2023/jun/20/gas-stoves-benzene-levels-study
MAP44
in
MPN Voice
11 months ago
Myelofibrosis and bone pain
how do people manage bone pain with Myelofibrosis. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep. I bought CBD oil but it is not really helping and paracetamol doesn’t work at all. I don’t want to get into
how do people manage bone pain with Myelofibrosis. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep. I bought CBD oil but it is not really helping and paracetamol doesn’t work at all. I don’t want to get into
kiwitraveller
in
MPN Voice
11 months ago
eyesight problems
hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA
hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA
Grendall
in
MPN Voice
11 months ago
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